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Mr. Garcia Uses Shared Decision Making Aids for Alzheimer's Care

These stories are fictional, but are based on real Veterans' experiences.

Profile: Mr. Garcia

Mr. Garcia is a 73 year old Vietnam Veteran who served in the Marines. He lives at home with his wife and was recently diagnosed with mild Alzheimer’s disease.

A Homemaker/Home Health Aide comes to his house twice a week to help with chores and check his blood pressure and glucose level.

He has felt disoriented in his neighborhood and has forgotten the way home a few times.

Mr. Garcia’s support system:

His wife worries about his safety at home alone.

His wife feels like she can no longer leave him alone.

They have 4 grown children, but they are each busy with job and family obligations and the closest one lives over 600 miles away.

While at an appointment at the VA medical center, his wife saw a poster for the online Guide to Long Term Care. They asked the doctor about it and he gave them a “prescription” for looking at the Guide and completing the Shared Decision Making Worksheet and the Caregiver Self-Assessment. The doctor also suggested that they talk with a social worker.

These stories are fictional, but are based on real Veterans' experiences.

Step 1: What were his needs?

Mr. Garcia’s wife took a look at the Guide to Long Term Care and printed out the Shared Decision Making Worksheet. She read the questions to Mr. Garcia and filled out what they thought, and some additional notes giving her perspective on the situation.

Mr. Garcia thinks he can manage most of his activities of daily living by himself.

She does not agree and thinks he needs more help because his memory is getting worse and he is very forgetful.

How his support system might help:

Mrs. Garcia feels it is too much for her to take care of him at home.

She wants to move him to a nursing home and she can come to see him 6 or 7 days a week.

His wife used the online Guide to Long Term Care to learn what services might be available.

These stories are fictional, but are based on real Veterans' experiences.

Step 2: Explore Options

Mrs. Garcia used the Guide to learn about long term care services and settings. She also used the Guide to find links to other websites and decided to talk with the caregiver support coordinator to explore what services are available to support her. The caregiver support coordinator encouraged her to complete the Caregiver Self-Assessment. Mrs. Garcia recalled that this was listed on the “prescription” the doctor gave them.

Mr. Garcia and his wife weighed the pros and cons of the long term care options that they learned about:

For Homemaker/Home Health Aide (Mr. Garcia’s suggestion):

Pro: Mr. Garcia is familiar with his current aide and could get more help from her.

Pro: Would help keep him living at home.

Con: Mrs. Garcia doesn’t feel she can leave home when Aide is there.

For Adult Day Health Care:

Pro: Mr. Garcia could get out of the house, but be in a safe environment.

Con: Mrs. Garcia would have to provide transportation to and from the facility.

For Respite Care:

Pro: Would give Mrs. Garcia a break and ease her worry about leaving Mr. Garcia at home alone.

Con: Mrs. Garcia would have to tidy up before the respite care worker came over.

For Nursing Home and other Residential Settings:

Pro: Round-the-clock care is provided.

Pro: There are more flexible and independent options than nursing homes such as Assisted Living.

Pro: Mrs. Garcia would worry less about Mr. Garcia’s safety, such as getting lost.

Con: He might not want so much supervision yet.

Con: Mr. Garcia would need to move out of the family home.

Con: It might be too expensive.

These stories are fictional, but are based on real Veterans' experiences.

Step 3: Involve Others

Mr. Garcia and his wife thought about their roles in the care decision. Doing Step 3 helped each of them think in more detail about how everyone that took part in the decision could be involved and supportive. Mrs. Garcia made an appointment with the social worker and she and Mr. Garcia brought the partially completed Shared Decision Making Worksheet and the Caregiver Self-Assessment to the meeting.

While talking with the social worker things became clearer. Who he would like to involve in the decision:

Mr. Garcia wrote down that he wants to involve his wife, but he feels both pressure and support from her.

Even though making decisions was hard for him, he still wanted to be part of the process as much as possible.

Mr. Garcia also thought they should talk with their adult children.

The preferences of the people close to him, and how they might influence the decision:

His wife realized that she assumed she would make the long term care decision mostly by herself.

His wife wanted to give more weight to her husband’s opinions and took nursing home care off her list of options for now.

Through talking with their adult children, Mrs. Garcia found out that they had already been talking with each other and that they had devised a plan for each adult child or their spouse to visit once a year for about a week. Mrs. Garcia wondered when they were going to tell her, but was overjoyed to know that as their dad’s Alzheimer’s progressed that they would be there to support both of them through this difficult situation.

The social worker helped both of them realize the benefits of doing Advance Care Planning while Mr. Garcia was still able to take part in the process. She also explained more about residential settings such as Adult Family Homes and Assisted Living and she told them about different types of Adult Day Health Care programs.

During their discussion, Mr. and Mrs. Garcia listened carefully to each other and tried to look at the issues from the other’s point of view. Mrs. Garcia was really glad that she took time to complete the Caregiver Self-Assessment.

The best thing about talking things over with the social worker was that Mrs. Garcia realized what she needed most was a break from caregiving. She learned that there were services and settings that were worth trying that neither she nor her husband had considered before. The social worker encouraged her to talk with the caregiver support coordinator. Mrs. Garcia realized that she had been so exhausted and so focused on a nursing home as the only solution that she hadn’t even thought about how a combination of Adult Day Health Care and Respite Care might meet their needs for now. Also, she had not looked for residential settings that allowed for more independence such as Assisted Living or Adult Family Homes.

Mr. Garcia's Shared Decision Making Worksheet

Mrs. Garcia's Caregiver Self-Assessment

These stories are fictional, but are based on real Veterans' experiences.

Step 4: Take Action

Finally, Mr. Garcia and his wife were ready to move even closer to making a decision about long term care. They reviewed his needs, thought about what is most important to him and his family, and had more information about support options. In Step 4, they plan the next steps to take:

His wife will signal their kids that they’d like the “support visits” plan to start in June.

They decided to try keeping Mr. Garcia at home with as many support services as possible.

Mrs. Garcia will call the social worker to find out what choices they have for Respite Care and how soon it can start.

Mr. and Mrs. Garcia will visit the 2 Adult Day Health Care facilities closest to their home.

3 weeks later: The social worker was glad that they used the shared decision making process. She feels it helped Mr. and Mrs. Garcia consider options for long term care. She was also relieved that they talked about this decision now, while Mr. Garcia was still able to actively participate in the decision making process. Mr. and Mrs. Garcia made a decision about which Adult Day Health Care program would best meet their needs. For now, both Mr. and Mrs. Garcia are happy with the plan for his long term care – at home.